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Feeling Fed Up With Celiac

Paulr

By Paulr
in Doctors

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Paulr Rookie
Paulr
Posted

PLEASE GIVE ME ADVICE FOUND OUT IN DEC/07 BLOOD POSITIVE FOR CELIAC GLUTEN FREE SINCE JAN/07 BLOOD NO BIOPSY DONE YET.SICK AS HELL FOR A YEAR NOW, DOCTOR SAY'S IT WAS ALWAY'S THERE BUT STRESS BROUGHT IT RIGHT OUT. MY SYMPTOMS ARE LOOSE WATERY STOOLS,DRY SKIN ON MY BELLY & FACE ,THE SHAKES WHEN I GO TO THE BATHROOM,MY FACE IS RED ON & OFF AND MAJOR DEPRESSION MY QUESTIONS ARE - WHEN DO YOU START TO FEEL BETTER?IAM DOWN ALL THE TIME AND IS IT NORMAL TO QUESTION WHETHER YOU HAVE CELIAC OR SOMETHING WORSE ,ALSO ARE BLOOD TEST'S 100% EFFECTIVE I BURN UP JUST WORRING ABOUT THIS PLEASE BE HONEST AND TELL ME WHAT YOU KNOW THANKS

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mouse Enthusiast
mouse
Posted

It depends on the person as to how fast they react to the diet. It is normal to question the results. You can never have a false positive on the blood test, but you can have a false negative. You did not say if you were having the endoscope or not. If you are, then you must eat gluten for 3 to months prior to the biopsies. The endoscope can not rule out Celiac as it can only confirm it. They have to take about 8 biopsies from the right places to get a positive diagnosis.

Good luck and know most of us have been where you are. Time heals.

Lisa Mentor
Lisa
Posted

Paulr:

Being diagnosed with Celiac is not as drastic as it may appear. A lot of it is a mind game. You need to know that what you put in you mouth can cause you serious problems. If you eat gluten you will be sick, if you don't you will feel better. That is the bottom line.

Celiac has over 200 symptoms. I too have the shakes after a year on the diet. It may take some time for you to remove gluten.

The learning curve may be steep but not do able. And you have a lot of very informed people here to answer you questions.

You can have success.

ravenwoodglass Mentor
ravenwoodglass
Posted
PLEASE GIVE ME ADVICE FOUND OUT IN DEC/07 BLOOD POSITIVE FOR CELIAC GLUTEN FREE SINCE JAN/07 BLOOD NO BIOPSY DONE YET.SICK AS HELL FOR A YEAR NOW, DOCTOR SAY'S IT WAS ALWAY'S THERE BUT STRESS BROUGHT IT RIGHT OUT. MY SYMPTOMS ARE LOOSE WATERY STOOLS,DRY SKIN ON MY BELLY & FACE ,THE SHAKES WHEN I GO TO THE BATHROOM,MY FACE IS RED ON & OFF AND MAJOR DEPRESSION MY QUESTIONS ARE - WHEN DO YOU START TO FEEL BETTER?IAM DOWN ALL THE TIME AND IS IT NORMAL TO QUESTION WHETHER YOU HAVE CELIAC OR SOMETHING WORSE ,ALSO ARE BLOOD TEST'S 100% EFFECTIVE I BURN UP JUST WORRING ABOUT THIS PLEASE BE HONEST AND TELL ME WHAT YOU KNOW THANKS

You haven't been gluten free for very long and it is easy to 'mess up' and let a little in without knowing it at first. The blood tests when they are positive are definate. You most likely are still getting gluten somewhere as well as going through a gluten withdrawl.

Are you living in a house with other gluten eaters? If so you need to be have your own cooking space and utensils and you need to have your own toaster and cutting board. When you cook imagine that everyone else had a real bad case of the flu and clean all surfaces before using them.

How much mainstream 'gluten free' food are you eating? For many we need to shop the outside of the store for a few months while we heal. Fresh or frozen veggies and fruits, fresh meats, organic unfortified rice, eggs, nuts and later on dairy are what you should eat for a while.

If you have not cut out dairy and alcohol do so for a bit. If you must have alcohol make it gluten free beer or wine. Later on when you are feeling better you can add them back in (challenge) and see if you tolerate them well. You also need to make sure there is no gluten derived ingredients in your toiletries and in hobby or craft stuff.

It takes a while to heal, and there is a big adjustment but it does get better.

Don't give up sometimes it takes a long time.

babygirl1234 Rookie
babygirl1234
Posted

i was fine up unit my mom died then the pains came back along with the D, which i havnt had when i was 1 Dx with it it could of been the bolw inf i had that caused the D but the stomach pains after i eat are still there went for a endscopy and colonscopy and both showed that my celiac disease is casing me so much pain, im on s sendative for the stomach pains so hopeful that will help and after all this time for being pain free for 10 or so years it can cause as much pain as it did when i 1st Dx with it grrrrrrr damn flar up lol

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    • Scott Adams
      How many grams is there in one slice of wheat bread?

      By Scott Adams · Posted

      The first set of results show two positive results for celiac disease, so at the very least it looks like you could have it, or at the least NCGS.   Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.      
    • Scott Adams
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      By Scott Adams · Posted

      Elevated tissue transglutaminase IgA (tTG-IgA) levels are highly specific for celiac disease, and they are a key biomarker used in its diagnosis. However, there are some rare instances where elevated tTG-IgA levels have been reported in conditions other than celiac disease. While these cases are not common, they have been documented in the literature. Below are some examples and references to studies or reviews that discuss these scenarios:  1. Non-Celiac Gluten Sensitivity (NCGS)    - NCGS typically does not cause elevated tTG-IgA levels, as it is not an autoimmune condition. However, some individuals with NCGS may have mild elevations in tTG-IgA due to intestinal inflammation or other factors, though this is not well-documented in large studies.    - Reference: Catassi, C., et al. (2013). *Non-Celiac Gluten Sensitivity: The New Frontier of Gluten-Related Disorders*. Nutrients, 5(10), 3839–3853. [DOI:10.3390/nu5103839](https://doi.org/10.3390/nu5103839)  2. Autoimmune Diseases    - Elevated tTG-IgA levels have been reported in other autoimmune conditions, such as type 1 diabetes, autoimmune hepatitis, and systemic lupus erythematosus (SLE). This is thought to be due to cross-reactivity or polyautoimmunity.    - Reference: Sblattero, D., et al. (2000). *The Role of Anti-Tissue Transglutaminase in the Diagnosis and Management of Celiac Disease*. Autoimmunity Reviews, 1(3), 129–135. [DOI:10.1016/S1568-9972(01)00022-3](https://doi.org/10.1016/S1568-9972(01)00022-3)  3. Chronic Liver Disease    - Conditions like chronic hepatitis or cirrhosis can sometimes lead to elevated tTG-IgA levels, possibly due to increased intestinal permeability or immune dysregulation.    - Reference: Vecchi, M., et al. (2003). *High Prevalence of Celiac Disease in Patients with Chronic Liver Disease: A Role for Gluten-Free Diet?* Gastroenterology, 125(5), 1522–1523. [DOI:10.1016/j.gastro.2003.08.031](https://doi.org/10.1016/j.gastro.2003.08.031)  4. Inflammatory Bowel Disease (IBD)    - Some patients with Crohn’s disease or ulcerative colitis may have elevated tTG-IgA levels due to intestinal inflammation and damage, though this is not common.    - Reference: Walker-Smith, J. A., et al. (1990). *Celiac Disease and Inflammatory Bowel Disease*. Journal of Pediatric Gastroenterology and Nutrition, 10(3), 389–391. [DOI:10.1097/00005176-199004000-00020](https://doi.org/10.1097/00005176-199004000-00020)  5. Infections and Parasites    - While infections (e.g., giardiasis) are more commonly associated with false-positive tTG-IgA results, chronic infections or parasitic infestations can sometimes lead to elevated levels due to mucosal damage.    - Reference: Rostami, K., et al. (1999). *The Role of Infections in Celiac Disease*. European Journal of Gastroenterology & Hepatology, 11(11), 1255–1258. [DOI:10.1097/00042737-199911000-00010](https://doi.org/10.1097/00042737-199911000-00010)  6. Cardiac Conditions    - Rarely, heart failure or severe cardiovascular disease has been associated with elevated tTG-IgA levels, possibly due to gut ischemia and increased intestinal permeability.    - Reference: Ludvigsson, J. F., et al. (2007). *Celiac Disease and Risk of Cardiovascular Disease: A Population-Based Cohort Study*. American Heart Journal, 153(6), 972–976. [DOI:10.1016/j.ahj.2007.03.019](https://doi.org/10.1016/j.ahj.2007.03.019)  Key Points: - Elevated tTG-IgA levels are highly specific for celiac disease, and in most cases, a positive result strongly suggests celiac disease. - Other conditions causing elevated tTG-IgA are rare and often accompanied by additional clinical findings. - If celiac disease is suspected, further testing (e.g., endoscopy with biopsy) is typically required for confirmation. If you’re looking for more specific studies, I recommend searching PubMed or other medical databases using terms like "elevated tTG-IgA non-celiac" or "tTG-IgA in non-celiac conditions." Let me know if you’d like help with that!
    • MaryMJ
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    • trents
      What should I do with these test results?

      By trents · Posted

      I agree. Doesn't look like you have celiac disease. Your elevated DGP-IGG must be due to something else. And it was within normal at that after your gluten challenge so it is erratic and doesn't seem to be tied to gluten consumption.
    • Jack Common
      How many grams is there in one slice of wheat bread?

      By Jack Common · Posted

      Hello! I want to share my situation. I had symptoms like some food intolerance, diarrhea, bloating, belching one year ago. I thought I could have celiac disease so I did the blood tests. The results were ambiguous for me so I saw the doctor and he said I needed to do tests to check whether I had any parasites as well. It turned out I had giardiasis. After treating it my symptoms didn't disappear immediately. And I decided to start a gluten free diet despite my doctor said I didn't have it. After some time symptoms disappeared but that time it wasn't unclear whether I'd had them because of eliminating gluten or that parasite. The symptoms for both are very similar. Giardiasis also damages the small intestine. The only way to check this was to start eating bread again as I thought. Now about my results.   These are my first test results (almost a year ago) when I had symptoms: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months. Symptoms disappeared. And I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   Nowadays I didn't have any symptoms except tiredness but I think it's just work. I think it was this parasite because two years ago, for example, and before I didn't have these symptoms and I always ate gluten food. But I'm still not sure especially because the Deamidated gliadin peptide IgG results are sometimes high. What do you think? @Scott Adams
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